Tolvaptan

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Hi I have been offered to start taking Tolvaptan and wondered if anyone on here is taking this or has taken it and stopped? It seems like a wonderful drug but even though I know everyone is different I wanted to find out how people have got on with it.

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  • Posted

    Hi Gemma, I have stage 3 PKD and I see my consultant once a year to track the progression of the disease. Last October I mentioned taking Tolvaptan but he said that our hospital in Norwich doesn't offer it. I have read about how effective it is in slowing down the disease and believe I would be elegible for it were it available here. I would love to know more about your experience with taking Tolvaptan as this will provide me with more information about pursuing accessing it from elsewhere. Hope it us working for you and looking forward to hearing more.

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    • Posted

      Hi thanks for your reply. I have not yet started to take it. My consultant mentioned it to me but did not really have much information about it. I decided that I would do some research first and then make up my mind for my next appointment in a couple of months. It does look promising g but as with all these things there are side effects. I just don't want to create another problem by taking this! Fingers crossed that this is offered in your area soon. I will keep you updated

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    • Posted

      Hi Gemma, best of luck if you do decide to go down that route and yes please keep me updated on your health and progress. 
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